Tuesday - Appointments

Gracie had a GREAT night. She slept the whole night through and was not restless at all. She awoke at 5:45 a.m. in a snuggly mood and we had a good morning. By 8:00 a.m. she was ready for a nap and slept for about 40 minutes. Then we headed to the clinic to meet with Gracie's physical therapist and reps from Rehab Design, which is where we will get Gracie's wheelchair from. They were great and Gracie was in the best mood for them. She cooperated nicely and then the time came for the toughest decision of all. They handed me a ring of color swatches to pick out her wheelchair color. The hot pink called my name, so did the bright orange, which is Gracie's favorite color, but in the end I went with an opal black - sort of a shimmery color. This wheelchair can be adjusted so that should she need it when she is 16 or 17, this will still work for her. That is the reason I didn't go with pink, I thought she would hate me if she was 16 or 17 and sitting in a pink wheelchair. When we left, I asked Gracie to say "bye, bye" and she waved all on her own. She started this on Sunday at Easter and has consistently done "bye, bye" when asked every time since, with the exception of when I leave the house...cause then she is usually fussing that I'm going.

We stopped in to see a few friends from work after our wheelchair measuring and showed them both our smiles and how we can fuss. I could tell Gracie was getting hungry, so we ate a couple of crackers and headed home for lunch. Gracie was so tired, I wasn't sure she would stay awake through lunch, but she managed to do so. She was asleep by noon and slept 2 hours before I had to wake her.

Then it was back to the clinic for an assessment with a speech therapist. The therapist had a lot of questions about what Gracie could do and Grace explored the room while we did so. At one point she was asking us about following commands and then also about whether or not she clapped. Jeff answered the question saying she hates clapping her hands and telling the therapist that she hates to even put her arms over her head. As if on cue, Gracie was at the table where we were talking and raised up one of her hands. I think she wanted to prove daddy wrong. So I figured, hey let's see if she'll do "so big" (she hasn't done this for us since way before her infantile spasms started). So I asked her "How big is Gracie?" Sure enough, both arms went high in the air and a big smile came across her face. Gracie was assessed at a 9 - 13 month old level in her language and communications skills. The therapist gave us some great ideas on how to work on words and communication with Gracie. We'll work on these things over the next 6 months and then will return for a follow-up assessment. The assessment at 9 - 13 months old was actually encouraging, especially when you realize that she has been on some major drugs for the last 5 months and had been dealing with Infantile Spasms, a disease that hinders development.

This was the first therapist that we have worked with that has had experience with children who have Sotos Syndrome. It was good for us to talk to her and she was very encouraging about Gracie's skills. It was a little disheartening, though, to hear that the Sotos patients she has worked with have a really hard time mastering speech due to tongue control and facial tone. Time will tell for Gracie. She has amazed us through other trials, we'll just continue to work with her and time will tell.

When we got home tonight we played outside for quite a while. It was so nice out and we even visited with our neighbors. Everyone wanted to be outside. After supper mommy had to go to work for a little while and Gracie and daddy took a stroller ride outside until Gracie was too tired to enjoy it. Mommy got home just in time to put Gracie to bed. Sweet dreams. Gracie needs her rest for more appointments tomorrow.

Love,
Lisa, Jeff, and Gracie